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BetterLife FSHD: A Patient-driven Health and Research Platform

NCT07409142 · Status: RECRUITING · Type: OBSERVATIONAL · Enrollment: 5000

Last updated 2026-02-20

No results posted yet for this study

Summary

BetterLife FSHD is a registry platform built to support people living with FSHD. It connects patients with personalized resources, tools, and research opportunities that match their health experiences and needs. At the same time, BetterLife collects secure health and experience data from patients to support research. This data is shared with researchers to help better understand FSHD and work toward improved care, treatments, and outcomes for the community.

Learn more and enroll at: www.BetterLifeFSHD.org

Conditions

  • FSH
  • FSH Muscular Dystrophy
  • FSHD - Facioscapulohumeral Muscular Dystrophy
  • FSHD1
  • FSHD
  • FSHD2
  • Facioscapulohumeral Muscular Dystrophy
  • Facioscapulohumeral Muscular Dystrophy 1
  • Facioscapulohumeral Muscular Dystrophy 2
  • Facioscapulohumeral Muscular Dystrophy (FSHD)
  • Muscular Dystrophy, Facioscapulohumeral

Interventions

OTHER

Observational

Observational study

Sponsors & Collaborators

  • FSHD Society

    lead OTHER

Principal Investigators

  • Amanda Hill, MBA · FSHD Society

Eligibility

Min Age
1 Year
Sex
ALL
Healthy Volunteers
No

Timeline & Regulatory

Start
2024-08-02
Primary Completion
2060-01-31
Completion
2060-01-31

Countries

  • United States

Study Locations

More Related Trials

Entities

Diseases

Read the full study record

This page highlights key information. For complete eligibility criteria, study locations, investigator contacts, and the full protocol, visit the original record on ClinicalTrials.gov.

View NCT07409142 on ClinicalTrials.gov